When Patients Read What Their Doctors Write

The woman was sitting on a gurney in the emergency room, and I was facing her, typing. I had just written about her abdominal pain when she posed a question I'd never been asked before: "May I take a look at what you're writing?"

At the time, I was a fourth-year medical resident in Boston. In our ER, doctors routinely typed visit notes, placed orders and checked past records while we were in patients' rooms. To maintain at least some eye contact, we faced our patients, with the computer between us.

But there was no reason why we couldn't be on the same side of the computer screen. I sat down next to her and showed her what I was typing. She began pointing out changes. She'd said that her pain had started three weeks ago, not last week. Her chart mentioned alcohol abuse in the past; she admitted that she was under a lot of stress and had returned to heavy drinking a couple of months ago.

As we talked, her diagnosis — inflammation of the pancreas from alcohol use — became clear, and I wondered why I'd never shown patients their records before. In medical school, we learn that medical records exist so that doctors can communicate with other doctors. No one told us about the benefits they could bring when shared with patients.

In fact, before the Health Insurance Portability and Accountability Act, a federal law enacted in 1996, patients generally had to sue to see their records. HIPAA, as that mouthful is abbreviated, affirmed that patients have a right to their medical information. But the process for obtaining records was often so cumbersome that few patients tried to access them.

In 2010, Tom Delbanco, an internist, and Jan Walker, a nurse and researcher, started an experiment called OpenNotes that let patients read what their primary care providers write about them. They hypothesized that giving patients access to notes would allow them to become more engaged in their care.

Many doctors resisted the idea. Wouldn't open medical records inhibit what they wrote about sensitive issues, such as substance abuse? What if patients misunderstood the notes? Would that lead to more lawsuits? And what would patients do with all the information anyway?

After the first year, the results were striking: 80 percent of patients who saw their records reported better understanding of their medical condition and said they were in better control of their health. Two-thirds reported that they were better at sticking with their prescriptions. Ninety-nine percent of the patients wanted OpenNotes to continue, and no doctor withdrew from the pilot. Instead, they shared anecdotes like mine. When patients see their records, there's more trust and more accuracy.

That day in the Boston ER was a turning point for me. Since I started sharing notes with my patients, they have made dozens of valuable corrections and changes, such as adding medication allergies and telling me when a previous medical problem has been resolved. We come up with treatment plans together. And when patients leave, they receive a copy of my detailed instructions. The medical record becomes a collaborative tool for patients, not just a record of what we doctors do to patients.

The OpenNotes experiment has become something of a movement, spreading to hospitals, health systems and doctors' offices across the country. The Mayo Clinic, Geisinger Health System and Veterans Affairs are among the adopters so far. (The OpenNotes project has received funding from the Robert Wood Johnson Foundation, which also provides financial support to NPR.)

But there are new controversies arising. Should patients receiving mental health services obtain full access to therapy records, or should there be limits to open records? What happens if patients want to share their records on social media? Will such "crowdsourcing" harm the doctor-patient relationship? What if patients want to develop their own record and videotape their medical encounter? Are doctors obligated to comply?

Delbanco tells me that he considers OpenNotes to be "like a new medication." Just like any new treatment, it will come with unexpected side effects. In the meantime, patients and doctors don't need to wait for the formal OpenNotes program to come to town. Patients can ask their doctors directly to look at their records. Doctors can try sharing them with patients, in real time, as I do now. It's changed my practice, and fundamentally transformed my understanding of whom the medical record ultimately belongs to: the patient.

Dr. Leana Wen was taking notes in the ER on a patient suffering from abdominal pain the first time it happened. The patient asked to see her notes. And Wen thought, well, why not? In a post on NPR's The Shots blog, Dr. Wen called that moment a turning point in her medical career. I spoke with her about the practice of doctors showing patients their notes, and why she has been doing it ever since.

DR. LEANA WEN: It helped me greatly in thinking about what this record is actually for. And I believe that it helped her, too, because it helped her think through her diagnosis with me and to come up with her treatment plan together - something that we hadn't done in the past.

WERTHEIMER: Now there was an attempt to sort of formalize this practice by a couple of medical people in 2010. They attempted to create a program called OpenNotes. Some doctors were a little bit weary of it. Why? I mean, what's the problem with doing that?

WEN: Medicine is very old-fashioned in a lot of ways. And even 20 years ago, patients had to literally sue the hospital to get access to their medical records. And so doctors aren't used to this concept. Some doctors said, well, maybe it will decrease patient trust in me if they see what I'm writing about them. Other doctors thought what if they sue me? Now they know exactly what I'm doing. So there's a lot of fear because they just don't know what to expect.

WERTHEIMER: Well, so what happened to the program? How did it go?

WEN: Amazingly well - 80 percent of patients who participated said that it increased their understanding of their medical condition. Two thirds of patients said that it increased their compliance with medications which I find to be astounding because increasing compliance is something that's incredibly hard to do. And none of the doctors who participated said that they wanted to withdraw from the program.

WERTHEIMER: Now OpenNotes has spread since 2010. The Mayo Clinic and the VA have adopted it. But there are still issues, are there not?

WEN: Dr. Delbanco, whom I interviewed for this piece, mentioned that OpenNotes, just like any new medication or any new treatment, will have unexpected side effects. And some of these things would include - what happens if the note is shared with a patient, and they want to post it on Facebook or Twitter? What will crowdsourcing do in terms of doctor-patient trust? And also what would happen if the patient wants to now record their medical encounter by smartphone and then post it everywhere? Does the doctor have a right to privacy as well? And what if the doctor says no? So there are all kinds of new issues that are coming up. But just because they're new issues doesn't mean that it's something we should turn back the clock and not try.

WERTHEIMER: Is there any kind of pushback coming?

WEN: So far OpenNotes has been tried primarily in the outpatient primary care setting where there is already an established relationship between the patient and their doctor. One could say that that is the easiest place, perhaps, to try something like this. This is not yet been tried in the ER setting - not yet been tried, as far as I know, in the inpatient setting where the patient is hospitalized. And I can imagine these settings being a little more problematic because these are acute settings where there's not that established relationship.

I do think that there could be an age component involved as well - that younger doctors like myself, perhaps, are more open to this idea because we're more comfortable with the electronic records, electronic sharing. But this is something that I would encourage every doctor to try. And patients, too, can ask their doctor. Your doctor may not say yes, but maybe they might.

WERTHEIMER: You can read Dr. Leana Wen's piece on The Shots blog on npr.org. Dr. Wen, thank you very much for joining us.